Fianna Fáil TD for Mayo, Lisa Chambers, has welcomed the long awaited approval of the drug, Spinraza, for children suffering with Spinal Muscular Atrophy.
Speaking on the matter Deputy Chambers said: "I am absolutely thrilled to see that the approval for Spinraza has finally been granted. It has been a long and stressful road for these children and their parents and I am just over the moon to see the fight has finally been won.
"Spinraza is the only treatment on the market for spinal muscular atrophy, which affects 25 children in the state. The drug is very expensive and without HSE reimbursement there is no way that these families could have afforded it. With the approval of the drug by the HSE these children will now get the much needed, life changing treatment they deserve.”
She continued: “I want to commend the families and the children suffering from SMA who embarked on a lengthy, hard fought campaign for the reimbursement of Spinraza. A huge well done to all involved, particularly to Grace O Malley, Cillian Mearns and their parents. The sheer determination shown by these two young children and their parents is truly inspiring. I am just thrilled to see that their hard work has finally paid off, and I want to wish them all the best for the future,” she concluded.
Also welcoming the news was Minister Michael Ring, who said: "This is the first ever treatment for children with SMA. I know how difficult this long journey has been for the families involved to get to this stage but I am very pleased that children in Ireland will now have access to Spinraza.
"Having met with and spoken to the families of the children directly affected by SMA, I know this is a truly momentous day for them and their families. This drug will hopefully enhance the quality of life for children suffering with SMA and I wish them all the very best."
Sinn Féin Senator Rose Conway Walsh welcomed the news saying: "I am thrilled with the decision and I commend the families who never gave up. Over the months I have watched these families continue the battle to secure Spinraza and I also witnessed their devastation when approval was refused in February.
"I am especially delighted for Grace O’Malley and Cillian Mearns, both from Mayo, who will now be able to enjoy a quality of life that they have not experienced before. Right throughout the campaign I have highlighted that time is of the essence, and I hope that all necessary steps are taken to ensure that access to the treatment is immediate."
